Tristan, a story in 3 parts

October 15th, 2010 § 4 comments

Part one: Tristan’s Valentine

My son Tristan is about to turn 4. I haven’t written about him much here. I started thinking about why that is, given that his life has given us more twists and turns than either of our other children. I think it’s precisely because he’s had his share of hardships that I have felt overprotective of him. But it really needn’t be that way.

Tristan’s physical problems are a bit unusual. For those of you who don’t know him, he had open heart surgery at seven months old to move an artery that was compressing his trachea, preventing him from breathing properly since the time he was born. He required feeding therapy to learn to eat after having trouble combining eating and breathing until that point.

He also had problems with his neck. From birth his head sat at an awkward angle. Doctors thought it was muscular torticollis that could be fixed with physical therapy. We did a DOC band to correct the flattened head he had as a result of this “fixed” neck position. But after a while my intuition told me it wasn’t muscular. I felt it was orthopedic, something that would be an extremely rare abnormality. I took him to an orthopedic surgeon who confirmed our fear: Tristan’s problems were more serious than just a tightened muscle.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We were told various diagnoses for his problems when he was about six months old– everything from cerebral palsy to Goldenhar Syndrome. But in the end, when pressed for a diagnosis they jokingly say he has “Tristan Adams Syndrome,” a combination of rare defects in his spine and hands.

The cervical vertebrae in his neck are not formed correctly. Half-formed, or fused together, the vertebrae near the base of his brain are mangled, appearing on x-rays, CT scans, and MRIs almost indistinguishable from one another. His adorable exterior hides a jigsaw puzzle-like appearance on the inside.

While the abnormal vertebrae caused him a severe head tilt to one side as an infant, it now appears from the outside as almost straight. As he’s grown his “z-curve” (two striking jogs in his neck which have thus far balanced eachother out; either one alone would have required surgical intervention already) has improved with growth.

We watch, we test, we monitor. If the congenital scoliosis (meaning a curvature of the spine since birth) worsens, he’ll need surgery to fuse his neck in a fixed state with rods and screws. His neck would not grow any more, and he’d have no mobility in it. Imagine having your neck in a position where it’s extremely short and you can’t turn it at all unless your whole upper body goes with it forever. So far, we’ve escaped this. But we are told that every growth spurt brings risk.

His other oddity are his hands. For the first year of his life we knew something was wrong, but no one could figure out what. He held his hands oddly. His thumbs just looked wrong– more like big toes. And finally, a hand surgeon was able to tell us: he has hypoplastic (underdeveloped) thumbs. He’s missing the muscle at the base of the thumb where the base of the thumb joins the wrist. I had never heard of that before. Likely, you haven’t either. That’s why no one could pick up on it. What does this mean? Functionally, it means his left thumb can’t bend at all. Try to pick something up holding your thumb out straight. Or hold a pencil, write your name. His right thumb bends slightly, but not “normally.” Oh, and yes, of course… he’s a lefty.

He doesn’t like to do things with his hands. He won’t write or draw. He can hold a spoon and fork, but prefers to eat with his hands.

Tristan’s surgeon says around now is a good time to do surgery to help get a bit more function in his left hand. By taking a tendon from another finger on his left hand and transplanting it to Tristan’s thumb, they hope to give him better mobility. It won’t allow him to bend his thumb. There isn’t a surgery that can do this: the muscle and tendon you use for this run all the way up to your elbow (who knew?!).

As I type this I know, looking at my thumbs while I type, that computers will be his saving grace. My thumbs stay straight when I type, and I am sure that he will learn quickly how to type and use a keyboard. He copies Paige and tries to play the piano. I think he might be able to do that too.

I remind myself about the documentaries I’ve seen over the years about people with different disabilities and how they’ve compensated. The YouTube video of the mom without arms who could change a diaper with her feet was one of the most amazing.

I know Tristan’s amazing spirit, his infectious giggle, his sweet and expressive face, his stubborn tenacity will get him through. I know he falls behind on every fine-motor skill evaluation. I know he won’t be able to play many sports well because of his hands or participate in lots of sports or fun activities because of the risk of neck injury.

When he brought home his valentines from school yesterday, his friend Bennett had written his name beautifully on the red paper. Tristan can’t write a letter. He knows them all, but he can’t write them.

My eyes teared up, jealous at the inscription.

I know he’s not going to do that anytime soon.
But I also know that somehow he will.

Someday he will.
And when he does,
that valentine with his name and mine
will go into my special box of keepsakes.

For always.

 

 

 

 

 

 

 

 

 

 

 

Shortly after that post, on his 4th birthday, Tristan had his tendon-transfer surgery.

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Part two: It’s My Birthday and All I Got Was This Lousy Cast

My son Tristan had surgery yesterday. With no food starting at 8 PM the night before, and no drinking after 7 AM the morning of, Tristan was wheeled back to surgery at 3 in the afternoon. He asked only once for something to eat and drink. All day he played with Matchbox cars in his hospital bed waiting. Never a tear, never a complaint. A few times he gently asked, “Can we go home now?”

 

 

 

 

 

 

 

 

 

 

 

 

Surgery finished at 6 and was a success. Our fantastic and caring surgeon at Shriners Hospital, Dr. Scott Kozin, decided in the operating room after seeing the tendon in his ring finger that it wasn’t sufficient; he closed up that finger and used the middle finger instead. The tendon was transferred, the ligament stabilizing his thumb was tightened, the web space between his thumb and pointer deepened. All went well and a large cast was placed on his arm from fingers to shoulder.

Rather than a typical heavy fiberglass cast he received a more modern version of immobilization. To avoid having to “saw” the cast off in 3 weeks, this one will unwrap. For this reason, the pediatric patients are not as scared when the casts come off. These are not usable in every situation, but it was nice that he could benefit. Unfortunately, the worst part will be that there is a pin in his hand stabilizing his thumb right now. That will be pulled out when the cast comes off. I predict that removal is not going to go over too well.

When he woke up, Tristan’s first concerns were for water and his cars. Within an hour of awakening his personality re-emerged. As he started drinking and eating his spark returned. By 9:15 PM we were on the road, anxious to get him home. By midnight he was tucked in bed with a dose of pain meds and his stuffed animals.

The orange striped handmade pillowcase with dog pulltoys on it was a gift from the hospital as well as a cute quilted blanket with trucks on it. Every child gets a set of these handmade comforts.

 

 

 

 

 

 

 

 

 

 

 

 

A nurse found out it was his 4th birthday yesterday and rounded up some toys for him… cars and a book that makes fire engine sounds. He had a stash of toys to carry home from the hospital.

It wasn’t a great way to spend a birthday, but in the long run, it was a good sacrifice. There’s still some leftover cake for him to eat later today. The best present of all was having him come through surgery well and be able to come home with us without even having to spend the night. While there, we saw so many children with orthopedic injuries/issues that would keep them at Shriners for weeks or even months.

About 2 hours after the above picture was taken, Tristan looked like this:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

That smile is the best present he could have given me.

……………………………………..

Part three: Have a Nice Day

Tristan recovered well from the surgery. I won’t show the picture of what his hand looked like when they removed the cast and there were black track marks of sutures all across his hand and wrist. The human body is amazing, healing itself after having so many things done to one tiny hand. Now, seven months later, all of the incisions in his hand are almost invisible, the only obvious one remaining is the long diagonal one on his left wrist where one end of the new tendon was attached. It’s still rather red but I know in time it will fade.

When the stitches came out Tristan needed extensive physical therapy to accomplish three tasks: stretch out the new web space, keep scar tissue from forming and tightening up the area, and get his brain used to communicating with the tendon in its new location.

A few months ago we encouraged him to hold a pen again, a paintbrush, any implement. If there’s one thing Tristan has always refused to do it’s written expression of any kind. The coordination and finger strength it takes to hold anything in his hand and make it do something deliberate is not an easy or enjoyable task for him.

About six weeks ago he started writing more. By “more” I mean completing a word without stopping. He had never colored a picture or fingerpainted. But through trial and error we patiently have worked with him to try a variety of options for writing. This week his therapist and I tried a dry-erase white board again. We’ve found that just because something doesn’t work once doesn’t mean it won’t work at a later date.

The combination of the marker making a smoother stroke (rather than the shaky, wavy lines he usually makes with pens, pencils, or crayons) and the smooth writing surface “clicked.”

The therapist was here at 6:45 a.m. on Tuesday morning for Tristan’s appointment. I took Colin to the bus and when I got back home and opened the door to the kitchen here is what I saw:

 

 

 

 

 

 

 

 

 

 

 

 

Now, to be fair, he did use his orange marker to trace the letters over the top of ones written in yellow by the therapist. It was a struggle, and took a lot of work. He still can’t write letters on his own without tracing. But it was a victory. It was a step. No mom could have been happier or prouder than I was. It might take him a little bit longer but he’ll get there.

And I will be there to hug him after every little step, the way I did when I saw this.

Tristan’s wish came true: I had a nice day.

In fact, I had a great day.

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§ 4 Responses to Tristan, a story in 3 parts"

  • Mary Helen says:

    So glad you shared Tristan’s story. And I’m thrilled to hear how well he’s doing. He’s so lucky to have a patient, loving mom like you!

  • Phil Donnelly Rooney says:

    Wonderful account, of brave boy and family and great medics ( in the widest sense of the word). I’m sure this story will give courage to families awaiting surgery on their children.
    Well done, Tristan keep it up

  • Leslie Greffenius says:

    This is a wonderful story. What a great, stoic, happy child you have!

  • Sarah McCoy says:

    Thank you for sharing this story… your family… Tristan… you. Truly, Lisa, you inspire me to hope big and appreciate the miraculous nature of the smallest moments. The triumph of a simple good day. You enrich my life. Thank you, friend.
    Xo

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